Saturday, July 24, 2010

An Invisible Disability, a Chronic Illness and Me: Rheumatoid Arthritis

Today, July 24, BloggersUnite is asking everyone to take the time on to raise awareness about people with disabilities: People First: Empowering People with Disabilities is important and not just for the obvious reasons.

The World Health Organization defines disability as: "an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."

Making disability even more complex is what is termed an invisible disability: one that isn't immediately apparent. Chronic illnesses like rheumatoid arthritis fall under this category. Add to that the intermittent nature of some of the symptoms of some of those illnesses and things are complicated even further.

I have rheumatoid arthritis, but I don't think of myself as disabled.

To look at me, you'd think I was fine. I can say this, though.

At my bus station, I can catch any one of four buses that drive past my street. Each bus stops at a different spot in the station, and those spots are strung out at increasing distances from the subway entrance. I used to be able to run for the furthest bus as I came up from the subway if I saw it waiting there. Now, chances are that's no longer possible: my feet usually hurt, and even if they're not actually hurting at the moment, running on hard pavement will make them hurt. If I see a bus, I sometimes walk toward it, but the buses often just leave. Sorry Mr. or Mrs. Bus Driver: I may look like I could run or walk a lot faster, but I can't...

I love to walk and often made the 25-minute trip home from the subway station to my place on foot, making sure to wear reasonably comfortable shoes, but managing regardless. Now, even with the most comfortable shoes, it's not always possible. Heck, the other day I walked down the street for dinner with a friend, a distance of no more than about 500 metres. My feet were hurting so I was taking it slowly, even though it was a very short distance. On the way back, my foot started hurting so much I couldn't help but limp badly. Sorry, car drivers: I may look like I should be able to walk faster through the intersection to clear that light, but I can't...

But I'm actually one of the lucky ones. There are others who have it much worse.

Nonetheless, to keep myself that lucky, and to keep myself from being incapacitated, I do a number of things:

• I shoot myself full of drugs once a week, drugs that yearly cost as much as a really nice new car, drugs that are used to treat cancer patients
• Every day, I top that off with a drug to prevent the side effects of the cancer drug, side effects like hair loss (tell that to the hair that washes down the drain each shower or floats around my apartment with the breezes), side effects like nausea (I keep candied ginger on hand to quell that – good thing I love ginger!)
• Every day, twice a day, I take a drug that eats away at my stomach
• Every day, I take another drug that's supposed to prevent that but that may cause my bones to break instead
• Every day, to round that all out, I take supplements to protect my bones, my heart and my joints, and keep eye drops beside my bed, because the arthritis and the drugs can affect all parts of my body, including my heart and lungs and eyes, not just my joints

Wow, Laurie.This is an excellent post, beautifully written and described. You've nailed RA -- your experience of it -- in a way that should open some eyes. And while this is *your* experience of RA, many of your symptoms are shared by thousands of us who also have the disease. Crap disease? Yes.

But we adjust, don't we. Somehow, we keep on keeping on. And we smile, we work, we catch the later bus, we manage in spite of it. One of the things that struck me as I read your post is how I tend not to think much about the things I can't do anymore. I've become so used to finding other ways around the obstacles RA throws up at me, I hardly think about it as I go around them, over them, under them or through them ...

Thanks for this. You wrote from your heart. And I hope you're feeling well, and strong, and ready for a new week.

there are times where realize one of the "perks" of using a wheelchair because of this crap disease (we should trademark that expression) is that no one questions my difficulty in doing certain things. Having a visible disability brings other types of discrimination, but not this one. I don't have to explain the severity of it and no one expects me to defend myself.

About Me

Disclaimer

I'm not a doctor. The information on this blog is intended for general knowledge and personal interest only and is not a substitute for medical advice or treatment. You should consult your physician for any health issues.

It's important to realize that my experiences with rheumatoid arthritis are unique to me. Each person experiences this disease in his/her own way, with unique symptoms and reactions to medications. Good luck on your journey.